“Arkansas Children’s Hospital was amazing,” says Sean Graves, whose son, Ari, was hospitalized for a seriousness illness. (See Ari's Return: Battling & Beating a Life-threatening Illness.)

“We felt very well taken care of. They went out of their way to help out.” Even with the excellent standard of care provided by ACH, extended hospital stays are a strain on the entire family. Sean and his wife Dorothy share advice that made Ari’s hospitalization more bearable.

1. Remember post-surgery standards and health guidelines apply to typical children. “Children with special needs will recover differently. You know your child best,” says Dorothy.
2. If your child is in the hospital, keep your eyes on them. A parent’s eyes and instincts are essential.
3. Do not forget your healthy children at home. “Our friends helped take care of Rowan while Ari was in the hospital, which helped her physically and emotionally,” says Dorothy. Sean adds that help “allowed both of us to have time with Ari and by ourselves. It made us more positive.” Dorothy also says that they spent time with Rowan individually.
4. Accept help from family and friends. “People bought us a bunch of Chef Shuttle [meal deliveries],” says Sean. “And they came to be with Ari—church, community, Easter Seals, friends. They all pitched in to keep life as normal as possible.”
5. Give each other a break, too. “We took turns living at the hospital,” says Sean.
6. Find a supportive community. “There’s an incredible community of moms of kids with Down syndrome,” says Dorothy. “There is also the Down syndrome Facebook group, Buddy Talk.” Sean adds, “The Down syndrome community brought a cooler of sodas, lunch meat, snacks. That was very nice!”
7. Expect changes. “One thing I didn’t expect was how Ari’s sleep would change after his hospitalization,” says Dorothy. “The month before being in the hospital, he slept through the night. Afterward, he would sleep two hours and then wake up screaming because he had night terrors.”
8. Remember that getting back to “normal” is a process. “The hardest thing was transitioning back to normal life—home and school,” says Sean. “We started with half a day of school, then went to full days. It was a six-week process with lots of ups and downs.”